BITCH STOLE MY LOOK

As I have mentioned before, I lost my hair due to lupus and its treatments  starting in 2010 (click here for details). Many women experience hair-loss at differing degrees because of lupus. For about two years, I rocked my bald head around Houston (with the occasional cover-up on the cooler days or when having a fancy meal).

Rocking this look comes with some great perks… and some lows. The obvious perks include: 1) easy hair management (you shower and GO!), 2) showing off your beautiful face, and 3) showing the world that you have more self-confidence in your pinky-toe than any other long-haired woman around you. The obvious lows…. well… 1) being constantly looked at (which I didn’t mind), 2) being the topic of whispered conversations (“I wonder why she is bald…” etc), and 3) having to deal with ridiculous ignorance and stupidity (seriously, once a jackass came up to me and said: “Are you lesbian?… you have no hair so that means you are a lesbian. You shouldn’t be here.” Let’s just say he walked into my fist, and then walked out with a bloody nose. Somehow, I got banned from the drinking establishment…).

Diva note: Do not allow these lows (especially brought on by other people’s insecurities and ignorance) to bring you down. It is not worth your time or your emotions!

During my time of baldness I followed the words of my hair stylist (if you are in the Houston-area, check out these ladies at A House of Designersdiva-approved) and from my best male friend (who else would know about scalp therapy than a man with a great set of hair–check out thementoringsession): TAKE CARE OF YOUR SCALP!

Sidenote: I tried the steroid injections into the scalp by my dermatologist (a total of 13 into the scalp in one sitting). But after 5 sessions, I was not seeing any results!

I became an advocate of taking care of my scalp. I invested in great shampoos and condition (check out Nioxin products). Monthly, I visited my hairstylist for a buzz-check and for a treatment of Nioxin Scalp Renew Dermabrasion Treatment. This treatment is like a facial for the scalp, can only be done in the salons, and recommended for use every 30-45 days. I recommend also checking out Nioxin Diamax, a leave-on treatment that can be used with the Nioxin 3-part systems for thicker, denser-looking hair.

Nioxin, known for products for thinning hair, has taken the science of skincare and applied it to a new at-home hair-thickening treatment, DiaMax. The intensely hydrating formula—which contains niacinamide and panthenol, ingredients also found in some of the best skin-saving creams–directly infuses each strand with healing, strengthening, and protective properties for plumped-up, thicker locks (nioxin.com; $50). [credits: Christina Han; W Magazine]

By the beginning of 2012, I have noticed my hair was growing back AND thicker! This is great news even if I still have a bald spot in the back of my head (about the size of a fist). My hair still tends to abandon ship when I am going through a flare. I talk about how to cover these “character” spots in a past post: Methotrexate + Benlysta= ?? On the real, I certainly do miss my no-fuss-hair-less morning routine!

January 2012 with a dear friend. My hair was growing back blonde!

After loosing your hair, you come to realize that you are more courageous in choosing hair styles– because if you don’t like it, you know you can always shave it off and still look fabulous! I was rocking my own personal style with hair– half head shaved while growing out the other side. I loved my ‘do and was certainly the only-one rocking it in the City of Houston (…where the long-haired blondes and brunettes roam…).

April 2012

While watching E! Fashion Police (a diva-obsession), my auntie Joan Rivers was making a comment about Miley Cyrus’ new do. I couldn’t believe my eyes- that BITCH STOLE MY LOOK!

September 2012

Damn the man! <Slapping Hand on Forehead> NOW, in addition to receiving the usual “I love your hair” comment, a statement of “It looks like Miley Cyrus” follows!  

Which brings me to my quote of the day:

Imitation is the greatest form of flattery! 😉

Stay Fabulous!

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Lupus Treatments: Trial and Error… and Patience

As we all know, there is no one treatment ([n]or cure) for lupus. How many times have you been asked, “So, there is no cure for that?”. OR how about that frustrated question from your love one as you are unable to move out of bed, “Aren’t you suppose to be getting better by now?”  HOW DO YOU RESPOND TO THAT?!? We have all been playing the worst waiting game… Waiting for the right treatment to make us feel an ounce better; Waiting for our quality of life to get back to how it used to be; Waiting to start living our life again.

…Just waiting…

Lupus requires a trial and error of finding the right medication(s) to help you get to that magical state of “remission”… or at least to a state where you do not feel limited. Yesterday, I had my 11th infusion of Benlysta (I will be hitting the one-year mark in December). In addition to my infusion, I had my monthly visit with Dr. Lupus. While I was waiting for him, I was flipping through his collections of throw-away magazines in the room. I grabbed one and stumbled onto a full-spread advertisement for Benlysta. It featured a happy-looking woman enjoying some social time with family and friends with the phrase: “I am fighting lupus with Benlysta.” I chuckled to myself and threw the magazine (in a passive aggressive manner) back onto the pile. I have been on this magical Benlysta for almost a year… and yet I am still waiting for a better outcome. Yes, I have felt better from 2 years ago… but I have had more than my share of lupus flares and hospital visits. Feeling my frustrations, my doctor agreed that  Benlysta-alone was not doing the trick— I have had 2 lupus-related hospital visits in the month of September, become a pill-popper to minimize the pain, and was sitting in front of the man with a temperature of 99.4 degrees. My doctor and I came to a shared decision to a new combination of Benlysta, prednisone and Imuran (azathioprine). This new combo will be sixth attempt to find lupus-relief.

Here is my lupus medication history.

MY TRIAL AND ERROR

Trial #1: Plaquenil (hydroxychloroquine) + Prednisone (duration ~8 months): It takes about 6 months for the effects of this anti-malaria to kick in. Before I can even get this pill in my hands, I had to get an approval from an opthamologist . Why? Because there is small risk (no more than 4% in unmonitored patients) of blindness. Pretty severe adverse effect, eh?

Error: Major muscle weakness. I found myself saying to my doctors, “I feel like my body is too heavy for my legs”.

Trial #2: Methotrexate + Prednisone (duration: ~4 months): I first started by taking the pill-form but had to switch to the injections to alleviate nausea often associated by ingesting the pills.

Error: Respiratory problems, an adverse effect of methotrexate. Saravanan and Kelly (Rheumatology 2006) stated: “As patients become less limited by their joint disease due to treatment, an increasing number report breathlessness as a result of respiratory involvement.” Keep in mind, fans, that I have asthma; so this put me at higher risk.

Trial #3: Benlysta + Prednisone (duration: ~2 months): I have previously talked about my journey with Benlysta. Go ahead… take a look at the past posts.

Error: It was not doing the trick.

Trial #4: Benlysta + Methotrexate + Prednisone (duration: ~3 months): I have talked about this as well. Go ahead… take a look. 🙂

Error: Overall, feeling of still-feeling-shitty and the respiratory problems. I felt like I had the flu. After this, it became very clear that methotrexate was not for me. Oddly enough, after I was taken off of methotrexate, I ended up in the hospital for heart and asthma problems. My pulmonologist explained that methotrexate was giving me some protective factor against asthma, and once I had given it up my air sacs decided to act up!

Trial #5: Back to Benlysta + Prednisone

Error: Still feeling shitty

Trial #6: Benlysta + Prednisone + Imuran

Before taking Imuran, your doc will run a genetic test. This is to determine if Imuran is the right drug for you. Certain risks that are associated with this drug are greater in those who have a specific genetic disorder. Your doctor will perform genetic testing prior to starting therapy to determine your risk.

I will keep you posted on my treatment journey… I am crossing my fingers that I will soon finish this damn “trial and error” phase of lupus.

For more info on lupus treatments, check out these two links from:

Lupus Foundation of America

Mayo Clinic

Stay Fabulous!

Diva-Worthy Song of the Day No. 4

Excuse Me- I am Still Standing

I let lupus get the best of me! AGAIN! I hate to admit this but for the past 3 months, I have been in hiding and nothing, not even a huge bottle of CYMBALTA, could get me out of the dumps. I had lost my DIVA-ATTITUDE! You want to know why? Because, Lupus sucks the big ONE. I am so over this disease. Let me share my tale of terror.

FIRST, I had to come to the following as a 30-something-year-old woman: 1) I can no longer live alone and had to move-in with my parents, 2) I can no longer drive… people of Houston were in danger, 3) I can no longer work a full 50-hour work week, and 4) OPIOID DEPENDENT. If that wasn’t pyschologically-ball-busting enough, my body decided to join the fun. In addition to fighting off daily-minute-by-minute pain, brittle bones, and trying to function with a crappy-central nervous system, I come to realize that my kidneys have thrown in the towel and my ovaries felt the need to funk out (aka premature ovary failure. Now my 60-year-old tia and I can bitch about hot flashes together, and I can gain 5lbs by looking at a cupcake). Soon I will be telling tales of the diva with lupus nephritis. Surprisingly, my liver is still holding on by a string. Apparently, all that training of binge drinking and drug use I put it through during my younger years paid off. On top of that, I have been exhausted and fatigued because my lone-leukocyte from my non-existent immune system (thank you, Benlysta) has been fighting infections left and right, including urine, respiratory and folliculitus (infection of the hair follicles– lame).

Of course, I still had to deal with life. And I may have not done such a great job with dealing with it. I had responsibilities like: going to work, submitting a grant, doing maid-of-honor stuff for my friend (the bride-to-be), and still try to maintain my composure. AND people still wanted me to be social and attend birthday dinners and game night?!?! YOU HAVE GOT TO BE KIDDING ME! What I really wanted to do was: Tell my boss to go to hell, NOT submit the grant that won’t get funded because of some political reason, tell my friend that I could care LESS about her bachelorette weekend and that she could shove her royal-wedding theme bridal shower (her idea) up her small ass, and crawl into bed with two-handfuls of vicodin and Norco. HOW DARE YOU?!?

WHEW! There you have it fans, I just queened out.

All of this was physically and emotionally exhausting- which induces flares. I am confident that everything will be OK. I trust that I am in good hands with Dr. Lupus and I have tremendous support from my family and my close friends. These are the guys that are always there, even when I feel like shit. They get it. So, why am I sharing this story? I do not share my stories for your sympathy or your “I’m sorry”. Because, I am not sorry. I am grateful for this experience. I am realizing more about myself and others through this process. I am actually lucky.. VERY LUCKY. I am grateful to even be breathing and able to type this out to school my fans. 😉

Take your pen and paper out, fans. Because here is your lesson that you will never forget. If you are able to blink and take a breath, you are STILL STANDING.

I tell myself the following phrase everyday:

I have everything within me to conquer the world.

Now, I may do it at a slower pace, but DAMNIT I will do it. It sounds lame, fans, but we can do it. Do not let lupus (or anyone else) bring you down.

The DIVA is back and this is a turning point in my journey and I am looking forward it.

Stay Fabulous

Beauty is skin deep

“Beauty is skin deep and I am in a sh!#-load of pain” -The Diva

WARNING: This blog is dedicated to the ladies of lupus (sorry dudes).

While getting my infusion of Benlysta, I came across an article on allwomenstalk.com entitled “7 Great Make-up Tips for Ladies Undergoing Chemo…“. It made me think: “I wonder how many fabulous chicas in lupus pain look at themselves in the mirror and say ‘Geez, what has this disease done to me?!'” Maybe you haven’t because you are uber-fabulous, but I am going to be honest (and it may seem vain)… I have said those exact words. There have been moments when I look at myself in the mirror and do not even recognize myself. I know I am awesome but there are times where I cannot deny that my body image (defined as an attitude towards one’s body, especially appearance) is somewhat low. I blame lupus. I know I was NO MODEL pre-lupus but I have always loved my body and appearance. I had the attitude of “I can rock ______”, even if to others I looked like a damn fool.

Lupus and Poor Body Image: It is OK to Admit it

Lupus is a multi-systemic disease that mostly affect young women, and it is disfiguring. So it is no surprise that it may affect physical and emotional health. There are several reasons as to why lupus affects our body image… it’s because it affects how our body is looking! Are you on steroids (i.e., prednisone)? Go look in the mirror right now… is your face looking like the typical full-moon character that Disney usually draws up? Or, chew on this: Why is it that I am losing hair on my head but growing a mustache?! How about gaining 5 pounds within a 2-day span (how is that even possible when I barely can keep my food down from all the nausea)?!?! Do you jiggle? I DO.

Disease manifestations, disease activity, lupus treatment-related damage, comorbidities (i.e., other disease that tag along with lupus- osteoporosis, arthritis, renal failure, etc), and medications may adversely affect body image. Skin rashes, uneven pigmentation, vitiligo, scars, loss of teeth, alopecia (i.e., hair loss), facial hair, stretch marks, weight gain, fatigue, pain, depression, unpredictability of flares, or lack of independence all contribute poor body image in women suffering from lupus. This also can affect our quality of life. Although the literature on body image in lupus is scant and controversial, a recent article adds more evidence that body image in lupus patients is poor. If you would like a copy of this article, please contact me.

Younger patients and those with cutaneous disease activity or damage, or depression are more likely to have poor body image-related quality of life. The bottom line is that poor body image is a realistic problem that patients with lupus frequently face (i.e., I AM NOT ALONE… neither are you), and this needs to be addressed through focused research on these specific issues. Of course, body image-related quality of life can be dealt with through some effective interventions, such as cognitive behavioral therapy with a trained therapist (I have one… more to come on that).

How to Not Look Like You are in Miserable Pain

Back to the allwomenstalk.com article that motivated me to pop in two vicodins and type away. Although it addresses the women on chemotherapy (remember methotrexate is a form of chemotherapy), this article gives some tips on how to keep that healthy glow even though you may feel like crap, and some Do’s and Don’ts to make-up. Don’t hate on it just yet… there is some truth to it, and I think the tips can apply to all of us (regardless of the medications we are taking …keep in mind, lupus alone does some silly sh!# to our body).

Although I feel like crap, I have had some people compliment on my skin. I know it is the new skin regimen I adopted once I started to loss my hair. When I was bald, my face was my new money maker. Yes, my hair is back but I have not abandoned the skin routine. This is what I do (in addition to the cardinal rule of keeping your face clean), it isn’t much but I hope it helps:

1. INVEST IN A MOISTURIZER. My skin started to feel dry once I started taking medications and I looked like I aged soooo fast! I know I am 30, but just because I have lupus I do not need to look like I am 55. I do not use a very heavy moisturizer because I did not want to induce a bigger acne breakout. Not only was my skin super dry, but there are days where my skin was an oily mess, a la puberty-years. There is no reasoning to it. So, I opt to use a gel-cream from Garnier “Moisture Rescue- Refreshing Gel Cream”.  For the really dry days, I use Philosophy “Take a Deep Breath”. This gel-cream is oil-free AND it helps calm those morning red-blotches.

2. JOIN THE BB CREAM TREND. IT IS WORTH IT! BB creams are suddenly everywhere… and there is a reason. BB stands for “Beauty Balm” or “Blemish Balm” depending on the formula, and they’re basically tinted moisturizers with skin care ingredients and SPF built in. The last thing you want to do to disguise the fact that you are feeling like caca is to pile on a bunch of make-up… then you start looking like a woman who looks flu-ridden and should be working a pole. The major plus of a BB cream is that in one bottle you have just the right amount of coverage, moisturizer AND sunscreen. We all know how important sunscreen is to us!! Basically, a BB cream is a tinted moisturizer with a little kick and extra benefits. The tinted moisturizer helps even-out my skin tone, even during those random occasions when the redness and uneven pigmentation conquers my face. My first BB cream was from Garnier, because it was $12.99 and I wanted to see what the big hype was about. Once I joined the bandwagon, I went to Sephora and bought Smashbox’s BB cream. Smashbox is best known for its primers. Their version is fragrance-free (unlike most of the others), so it’s ideal if you’re allergic or sensitive to fragrances. It feels fantastic going on and looks great even at the end of a long, hot Houston day. I can be sweaty but still have a fresh face.

3. BRONZER/BLUSH the Color Back in. This is probably common sense. The use of bronzer will add some glow and life back to your pale skin. A light-hand will give just the right touch of sun-kiss that is needed.

Fans, please don’t forget that despite the weight-gain, hair-loss, and other-body altering stuff that lupus does to us, we will always be fabulous. Why? Because we are strong enough to go through and SURPASS something that the majority cannot even imagine.  And we do it with a smile.

Stay fabulous.

 

Insert Creative Title Here: Benlysta and Common Side-Effects

I started my first Benlysta infusion late December 2011.  I just had my 7th infusion yesterday afternoon along with my monthly visit with the GREAT Dr. Lupus.  Today, I am feeling the “what- is-becoming” my normal after-poking side effects. Although it took awhile (yes… I am a bit dumb and slow at times), I think I am finally at a place where I can predict how I will feel after an infusion. You would think that the day following infusion is all sunshines and butterflies.   WELL IT ISN’T, DAMNIT! This IS the time when you will most likely notice the common drug side-effects, including:

  • Nausea
  • Diarrhea
  • Fever
  • Stuffy or runny nose
  • Sore throat
  • Cough (bronchitis)
  • Trouble sleeping
  • Leg or arm pain
  • Headache (migraine)
  • Urinary tract infection
  • Decreased white blood cell count (leukopenia)
  • Vomiting
  • Stomach pain

I have experienced most of these side-effects post-infusion (except leukopenia) at least once, twice or thrice.  Those that are highlighted above are the ones that have become part of my day-after-infusion routine.

Let me elaborate: As soon as I came home from my infusion, I crashed into what-I-hoped was-my-bed and did not wake up until 7 hours later… at 1 am! I still receive Benadryl pre-treatment with my infusion because I am a geeky-glasses-wearing-allergic.  Although I do not fall victim to the Benadryl’s sleeping spell during my treatment, I later become tired and silly-loopy as soon as I sit in the passenger side while a family member drives me home. My poor father was victim to my slurred, idiotic conversations regarding unicorns and cheeseburgers. After I climbed out of my mini-coma at 1 am, I checked my phone and saw that I sent some silly texts in my drugged haze (similar to those drunk texts that we are all too familiar with…). This is when I come to notice that during my haze I made an attempt to become a literary genius. I can’t make this up, nor do I have any shame…. This is an example of a text I sent last night: “Hey Faaagina  [obviously sounding out vagina] I need to blow so that I can grow”.  There you have it, fans, go ahead– judge me. Don’t Text Post-Infusion!

Kids don’t Infuse and Text!

Of course, I had trouble going back to sleep after waking at 1am. During my tossing and turning, I decided to welcome stomach pain and headache into the mix. 😉 When I did finally get to sleep, it was very light and unrestful.  I stumbled out of bed this morning and experienced the greatest combo o f leg and arm pain along with vomiting. Try rushing to a toilet when you can’t move your own damn legs.  It takes skills and talent. But I made it to work this morning… and on time. At this very moment, I am still experiencing arm and leg pain (on the right side) and a little of the “drugged” feeling (a la lupus fog). But I am still here and making it happen… one step at a time (baby steps)!

SIDE NOTE:

I think I am starting to see a little, teeny benefit from my combo of Benlysta and methotrexate (yay!). I expressed this with Dr. Lupus (“Hey doc, I don’t think I am getting worse!”) and we are going to continue the course… so I am crossing my fingers that I am making my way to the light at the end of the tunnel.

 

Stay Fabulous!

Methotrexate + Benlysta = ??

Methotrexate, developed to fight cancer, is known as the “gold standard” — the best drug — for the treatment of rheumatoid arthritis. It has also been shown to be very effective in treating skin lesions, arthritis, and pleuritis in people with lupus. Belimumab (Benlysta) is used with other medications to treat people with certain types of systemic lupus erythematosus. Belimumab is in a class of medications called monoclonal antibodies. It works by blocking the activity of a certain protein in people with SLE.

Again, I awake on a Sunday morning thinking:

What day is it?!?

1) What day is it?

2) How long was I asleep? and

3) What did I do on Saturday?

As I had mentioned before in a prior post, infusions of Benlysta alone was not enough to control the monster that is lupus. This is common,  as many patients are taking Benlysta in combination of some other lupus-regimen. For these patients, including myself, lupus seems to be too aggressive for just one treatment (i.e., monotherapy). For my case, Dr. Lupus put me back on the weekly, injectable methotrexate regimen in combination of the monthly Benlysta infusions (i.e., dual therapy). After several weeks of no improvement, my methotrexate dose was increased.  The results? It is too soon to tell, as improvements usually are first seen in 3-6 weeks. The full benefit of this drug may not be seen until after 12 weeks of treatment.

Although I may not (yet) be able to notice the benefit, I have noticed some of the lovely side effects that come with methotrexate: 1) nausea, 2) slight hair-loss, and 3) FATIGUE. A little nausea is expected with methotrexate, but there are some actions that can be taken to reduce this. First, if the stomach issues are really bothersome, switching from pill- to injectable-dose can reduce these issues. I originally was prescribed the pill-form of methotrexate but suffered with crazy nausea and vomiting. Plus, my appetite decreased with the pill-form (side-note: not a great thing! I am a lady who loves to eat!). Once these concerns were expressed to Dr. Lupus, I was handed a syringe and bottle (along with some lessons on how to poke myself properly).

What about the hair-loss?Well, it isn’t too bad. I should mention that losing a couple of strands is not bad in comparison to once being bald. I do have to practice the art of “cover-up” as part of my morning routine. Due to the crazy Houston heat and humidity, I have ditched the wigs. My options have been 1) tying a scarf, 2) applying the fabulous and dependable Joan Rivers Beauty Great Hair Day fill-in powder (brush included when purchased), or 3) Kamo hair fibers (literally small hair fibers that camouflage for full-looking hair).  Different from lupus-induced hair loss, hair loss from methotrexate use does come back. Just give it some time.

Fatigue is the number one side effect of Methotrexate.

Sunday morning-ish

FATIGUE— what provoked me to write today. I take my weekly shots of methotrexate on Friday evenings. Its amazing how my body knows it is time for the weekly injection, because I am hurting Friday mornings and throughout the day. Like a druggie, all I can think of is getting home to shoot myself up with this poison (really- the color of this liquid is Mountain Dew yellow…). A couple of hours after my injection, I am exhausted and fall into my bed. I only emerge from my cave of a bedroom until the following Sunday. That’s right- all of Saturday is GONE! Yes, I am a tad frustrated– only because I am still a single-thirty-year-old who wants to have fun, especially on a Saturday. My weekend routine has become a huge lonely sleep-fest with the occasional web-browsing to have some connection to the outside world. And, of course on Sunday, I check on Facebook and Twitter to see what  kind of dumb trouble my friends got into– and I do judge them ;).

Balancing the drug risks and benefits… while factoring in side-effects, nuisances, convenience, and quality of life

THE DIFFICULT MATH EQUATION OF LIVING WITH LUPUS (or any chronic disease that requires treatment): We all know that pill we swallow, that injection we take in, or that liquid that we watch dripped and infused into our body via IV has a risk-of-something. Those risks, severe or not, have to be balanced by US, the patient, with the potential benefits. So, when do we say NO MORE to the drug that is potentially there to help us? Well, that is on an individual basis. We each have our own preference and we each need to voice that preference. We, as patients, need to know the answer to the difficult math equation:

When do the drug risks and side effects outweigh the benefit of treatment and our quality of life?  

Remember, to include those other factors that may weigh your decision- costs, convenience, nuisance… etc. These factors will differ for every person. Unfortunately, I don’t have the answer to everyone’s equation… I am just barely figuring out mine. For instance, the equation I face is the following: How do I balance pain-relief to quality of life? In other words, is the potential pain-relief worth me losing a Saturday? I will know the answers once I start seeing the benefits… but for now I don’t mind getting to spend one-day in bed while my body is getting its fix. And to be quite honest, I feel better on this Sunday.

Smoking the Pain Away

Adios Pain. Hellllo Cheetos. (Prettied-up by The Diva)

Many of us were offered a hit. While some may have said “No thanks. I have fill in blank for excuse,” some of us tried it and coughed up a lung. As the others laughed at the consequence of your first puff, you hold in the smoke, inspect the object within your fingers, and either shake your head in disgust or nod your head with a grin. After that first time, a few of us (who grinned) returned to claim a cushion of an old sofa (or an old futon or floor space or fold-out chair on the balcony) and performed the classic ritual of puff-puff-and-pass while watching Cheech and Chong’s “Up in Smoke” or an episode of Family Guy. If you are chuckling at this very moment, then one of two things can be assumed, 1) I am f*#cking hilarious or 2) you were (are??) a stoner.

Today, on April 20, I dedicate my post to the use of weed. Your first time hearing 420? Check out this all-you-need-to-know about 420 by Boston.com. (Note: If you want to know the history and philosophy, then go ask that dude who still wears the tie-dye T-shirt with Hemp sandals, and is home during the day):
  • WHO CELEBRATES: Anyone who is a pothead. Of course, college students roam free on some grassy field. Other devout-users, who happen to have a job, will take a vacation-day. I know someone who is thirty-something and never takes a day off– EXCEPT on April 20th of every year.
  • WHAT DOES IT MEAN: Of course the origin of 420 is shady. Some sources say it was a code for marijuana spread among California-pot users in the 1960s and spread nationwide among followers of the Grateful Dead. There is even legend that says that 420 was once police code in Southern California to denote marijuana use.
  • FUN FACT 1: Today in Austin, Texas, country music legend and an open devout-user, Willie Nelson, helped unveil an 8-foot statue of himself in downtown Austin at 4:20 p.m. local time.
  • HOW MANY STATES HAVE LEGALIZED MEDICAL MARIJUANA? Sixteen states (starting with California in 1996) now allow the use of medicinal marijuana.
  • REMINDER: Marijuana use, sale and possession are STILL illegal under federal law.
  • FUN FACT 2: Archaeologists have identified fibers from cannabis stems in specimens dating back to 4000 BC, and its incorporation into textiles and paper was found in the tombs of the Chinese Han dynasty (∼100 BC) (Zuardi AW. Rev Bras Psiquiatr 2006).
  • FUN FACT 3: I am high-as-a-kite as I am writing this. (go ahead… catch all the mistakes and typos within this post)

So, other than joining all the other bloggers’ attempt to get some attention on April 20, why do I dedicate a post to this? 

Fellow lupus warriors, do you remember that first time when you described your intense pain to an outsider? Unless that person was made out of coal, he/she empathized with you, and immediately tried to help you find a solution. Remember those first couple of suggestions?

“Have you ever… um… tried smoking weed to deal with the pain? [sometimes followed with] I know a guy…”

We have all been asked. We have all researched it. We have all considered it. Many websites are dedicated with the use of marijuana and lupus. What does the medical research say? Using my research skills for some good, I performed a medical literature search on the topic– using the search terms “cannabis” and “lupus”– one article from 1998 comes up. A result of 148 articles come up when I broaden my search (using the terms “cannabis” and “chronic pain”). In summary: The analgesic effects of smoking weed remain controversial. That really doesn’t stop anyone, a (under)reported 10-15% of patients with non-cancer pain still light up a doobie (Ware MA, Doyle CR, Woods R, et al. Pain 2003).

Why Mary Jane to Treat the Pain?: The first record of cannabis as a medicine can be found in the oldest Chinese pharmacopeia, written in AD 25 to AD 220, which was indicated for rheumatic pain, malaria, constipation, and disorders of the female reproductive system (Touw M. J Psychoactive Drugs 1981). Without going through all the pharmacological mechanism on the nervous system, let me just say there is a biological plausibility for smoking to reduce pain.

Does it Work?: Based on personal experience, HELL YES IT DOES. But it is no miracle drug, just like all good things in life (i.e., vicodin), the effects do not last long nor are they powerful. Smoking dulls the pain and puts me at ease. Also, smoking helped solve my appetite-loss and nausea associated with beginning uses of methotrexate.

When Do I Light Up?: Not everyday. I am not going to lie, when I first got my hands on marijuana, I  would light up every night. Sounds fun, eh? EXCEPT I started to realize that the effects were faaaaaaading away fast. In other words, the potency of smoking weakened with every light. Similar to other painkillers, I became use to its effects and more was needed to dull the pain. Also, lighting up everyday did not work well with my lupus CNS. Marijuana can cause multiple psychmotor symptoms, including impairment of cognition and memory. I already experience foggy-moments, shakes, memory loss and etc… I certainly did not want to intensify these symptoms! Currently, I save my joints for those special occasions. You know- those days when you are at the point of tears from the pain and frustrated with the situation. On those special days, I hobble to the balcony and “take a breath.”

Why the Doctors Are Not Handing You a Joint with Your Painkiller Prescription: Weed/cannabis/mary jane/pot is recognized as a substance with a high potential for dependence, which occurs in 1 out of 10 people of anyone who takes a puff. It can lead to behaviors of preoccupation, compulsion, reinforcement, and withdrawal after chronic use (Dragt S et al. Can J Psychiatry 2010). Smoking can also cause some other bad things to happen to users, especially the first-comers. So, it just comes down to balancing the risks and benefits. The potential risks are known and the benefits are not that great to trump the risks (boooooo!!!).

You thinking about it? I believe we should try anything once, how else will we know if we like it or if it even works. USE CAUTION! Tell your doctor that you are using. There is no shame in being open about it when using for pain treatment. Get your dose from someone dependable— NOT from your friend’s, friend’s sister’s ex-boyfriend’s roommate. As with any new treatment, use your common sense and don’t be dumb.

Enjoy 420. Light up, take it easy and zone-out, lupus warriors. I leave you with three of my favorite smoking songs:

BE FABULOUS!